When your child’s birthday is complicated

Today we should be celebrating my first born’s eighteenth birthday. But Alexander’s birthdays are complicated.

He came out of the womb not breathing. Blue. A blue baby. My baby. Brain dead.

“What? I don’t understand. What are you saying?” My husband and I stood in front of the neurologist in the NICU some hours after childbirth. He kept talking to us about brain scans, data, and brainwaves. I couldn’t understand any of it. His demeanor was that of a mechanic explaining that my car needed new brakes or an oil change. He was so calm. And detached. And clinical. But when he said the two words that I was able to understand, brain dead, my eyes snapped to attention.

“Are you talking about our son?” Why was he speaking as if our son, Alexander Carl Actis, was a thing to be diagnosed and then denounced—unfixable?

“In cases like this,” the doctor said, “we hope that babies like Alexander die. We encourage you to act quickly.” Act quickly? Oh yes. We were being asked to swiftly decide whether to remove our newborn from life support. An impossible decision. But one we were forced to make.

We asked for time. The hospital staff discouraged it. We needed time. And so we took it. The next day we made the nightmarish decision to remove our son from the ventilator that was pushing life-saving air into his lungs. They ushered us into a side room so we could watch our son die. In private.

But the doctors didn’t know I had a secret weapon: a mother’s desperate wish, a prayer for her son to live. And so, when they took him off the ventilator and placed him in my arms for the first time, Alexander surprised everybody. He kept breathing. And then, he got a little bit stronger. Eighteen hours later, when the doctors had finally given up hope that Alexander would die, they gave in to the reality that Alexander had survived. Sort of.

Instead of going home from the hospital with empty arms, to an empty nursery, my arms were full of my baby. And hospice pamphlets.

My son may have survived, but he wasn’t expected to live.

Eighteen years later, nothing has changed. All the firsts I had been praying for never came: the first time he would hold his head up by himself. The first time he would roll over. The first time he would sit up on his own. His first steps. His first smile.

I’m still waiting for these things. The difference is that I no longer hope for them.

The firsts we have experienced with Alexander have been different.

The first time he came home from the hospital. The first time he didn’t die when he was expected to. His first feeding tube. His first breathing treatment. The first time my son was too heavy for me to lift. The first time my son was too big for me to hold. The first time I stopped praying for a miracle. The first time I started to worry about his living instead of his dying.

What happens if he outlives his father and me? Who will love and care for him then?

What mother worries about her son living?

I do. Every single day.

But it is nothing compared to my fear that he is going to die.

So Alexander’s birthdays are complicated.

For most, birthday celebrations are filled with balloons: colorful bits of latex, effervescent, inflated with all the possibilities of the future, held up by a parent’s dream for their child.

But for Alexander, these balloons are empty promises. He doesn’t get balloons. Instead, he gets lead weights of all the things his future doesn’t hold. And each passing year holds a new never. This year he will never go to kindergarten. This year he will never learn to read. This year he will never make cookies for Santa, ride a bike, make a science project, have a best friend, go to a school dance, hold a girl’s hand, have a first kiss, go to college, fall in love….

I will never get to hear my son’s voice, watch him run, see him smile, or share a laugh with him. He will never hug me back. I will never know his favorite color, his favorite food, or hear his secret wishes.

So every year a new set of milestones, instead of being reached, are collected in my heart. And they are heavy. And they make it difficult to breathe. And they threaten to crush me.

But then my heart grows stronger to accommodate this new collection of lost hopes. It keeps beating. It grows more scar tissue and the new set of “nevers” are absorbed into its core. I get used to the additional weight. Life continues. Another year passes. And nothing changes for Alexander.

With each passing year I get older, and continue to wonder how many more years he has left.

And every year, I revisit his birth. I wonder, should I have prayed for his death, instead of for his life? Were the doctors right? Would it have been better if he had died?

And every year I come to the realization that I don’t know the answer to these questions. The only thing I know for sure, that if given the chance, I wouldn’t change my prayer. I couldn’t change my prayer. The only thing I know how to do is to pray for my son’s life.

And so, Alexander’s birthdays remain complicated. Perhaps one day, everything will finally make sense. I will have answers to all of my questions. Perhaps one day I will be able to relinquish the guilt that I have carried for praying for my son’s life instead of his death. And I will forgive the doctors for planting the seed that it would have been better if Alexander had died. Perhaps one day, this double-dose of forgiveness and understanding will be expansive enough to fill a dozen colorful bits of latex, and Alexander will get his birthday balloons after all.

Shauna Actis is a stay-at-home mother of three, and lives in the foothills of the Sierras.

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10Comments

When I started reading your article, I thought it was going to be about a boy with Autism. I am always so hopeful that birthdays and Christmas’s will go well and am always sad when they do not. But, your story really took the breath out of me and I just had to write and say that you are an amazing Mom. I can totally relate to your thoughts “And each passing year holds a new never” it’s really sad as we watch other children reach and pass milestones, drivers license, college, etc…..I keep hoping it will get better, but still waiting. Hugs to your and your family. I feel for ya.

Thank you for your comment. I really appreciate it. I wish you the very best on the challenges you face. I keep waiting for it to get easier. And in some ways it does. But then his birthday rolls around and it takes me right back. I’m learning to accept this time of year as a grieving period. To be kind to myself. Be kind to yourself too. Hugs to you.

Christmas is always hard too. My Seth has no interest in opening presents or seeing what is in his stocking and I’ve gotten used to it over the year, but still buy him lots of clothes and sensory toys, but I’ve learned to let a lot of his presents be from Santa, and just set out, as we don’t wrap Santa gifts. My younger neuro-typical son has always been great with Seth and will help open his presents, etc…..but this time of year is really hard. I keep seeing pictures of these large families on FB with everyone smiling and happy and joyful and I just feel sad on all that he is missing out on. He’s really happy when he is at home or at his adult day center, but I have to figure out a plan for what will happen to him when his Dad and I can no longer take care of him. That’s what keeps me up at night and I’m sure it does you too/ Hugs to you ! We’ll get through it somehow.
xoxoxo

Incredibly beautiful and sad and brave. I wish I had the right words to honor your heartache and your struggle and your love for your son. I don’t know how I found your story on this random Friday night. I am struggling on a totally unrelated different level as a parent but please know I am out here in the universe wishing and hoping the best for you and your family.

Oh my gosh Ann. Thank you for your kindness. I had so many doubts submitting this article. It is so personal. But if it touches you, or speaks to your heart in any way, then I am grateful. Sometimes it is through the sharing of our struggles that we step out of our loneliness and into connectedness. Wishing you the very best in whatever challenge you are facing in this moment.

You are so welcome. Thank you so much for sharing your story and honoring your son this way. I hope it has helped you and connected you with other people to make you feel less lonely. I wish you and your family every happiness.